Par Rich

One thing that Dr. Kays said during our visit has been echoing in the back of my mind for a week now--"Now that Par has survived CDH..."
Wow. Par survived CDH. Being on the other side of the hill--it is too easy to forget the journey we've been on--which is good to some extent--for Par's benefit--we need to look forward as we work with him to gain weight, roll over, and eventually crawl, talk, steal our keys and take the car to pick up his girlfriend... But I don't want to forget how incredible our journey has been--how the power of prayer touched our lives so heavily--how Dr. Kays' knowledge and experience saved our baby boy. We feel certain our outcome would be different if it weren't for him. This blog has served many purposes as I have said in the past--but I feel if I continue on posting about Par and his progress it may lose the powerful message:
1. We know all of this is only because of our Merciful Father.
2. After all of our research, Dr. Kays is the foremost authority on the treatment of CDH, along with the highest survival rate in the country (could be the world).
3. Prenatal diagnosis of CDH is SO important--so ask that your OB screen specifically for this at your 20 week ultrasound(they should anyway).

Although not equally, these three points have given us an otherwise healthy son who is now enjoying his family at home and his new best friend Tiffany. Hopefully this blog will be of help to other pregnant mother's with a CDH diagnosis. If you want to continue to read my 'babbling' and of course keep updated on Par and Tiffany (his dog)--feel free to visit our new family blog-- www.familyofriches.blogspot.com

We've enjoyed each comment and felt every prayer for our son--thank you for all the support. May God continue to bless you.
Love,
Liz, Rusty & Par

Quick trip...back with good news...

Our trip to Gainesville was long but not too bad. Par did really well in the car (as did Tiffany) and we didn't have to stop an excessive amount--he was good about eating and sleeping--no melt downs (thank goodness). As we arrived into Gainesville--

(cue Twilight Zone music)

it brought back some really strange/weird feelings. Last time I drove into this city I had no idea what God had instore for our little family. I was pregnant, anxious about Par's birth and the unknown and lacking 2 Christmas stockings. Now, driving in, I have our little miracle baby awake and ready to chow down, I know the outcome of the delivery and we've made it through a really emotional and physically draining NICU stay--these feelings overwhelmed me as we drove in--and I wasn't expecting it at all. To top it off, we walked into our "home" at the Homewood Suites--we were greeted by familiar faces and given our room key--they had upgraded us and we walked into our "same" room. Different floor, but our same room. It was a strange feeling.



But...our precious Par was here with us and ready to get down to business with eating and lounging. I fed him and then we headed to Josh and Tina's for a playdate with Ella. They fixed us a delicious meal--and although Tina and I were getting up throughout the meal to tend to our babies--it was a nice dinner and i am so glad we were able to spend the time with them. We slept well--all of us did--and woke up having to hurry to get to our appointment at 9:30am.



We were a wee bit late--but they didn't seem to notice. Par was stripped down to be weighed and decided that it was a good time to demonstrate his kidney function for the nurse. Needless to say, it was a mess and Par didn't even act like he knew anything had happened.



Par was tired and not being his energetic self the first time Dr. Kays came in--He perked up a little bit when Dr. Kays started to exam him but then got a little upset because he was hungry. Dr. Kays had just finished saying his main concern is Par's weight gain and because he was hungry, we all agreed to take a little break and let Par eat. Dr. Kays came back in about 30 minutes later and wrapped up our meeting: Par's oxygen is discontinued during the day and he only has to sleep with it for about a month. His lasix is to be weaned over the next two weeks and he is going to stay on his other medication for right now. Dr. Kays seemed pleased with Par's progress--but we just need to fatten this kid up...so we are working on it...sort of tricky, so please pray for Par to gain weight. The appointment was very positive and we don't have to go back to Gainesville until Par is a year old (YAY!)--they spoke volumes as to the confidence Dr. Kays seems to have in Par's recovery.



After our appointment, we went back to the NICU 3 & 2 to say a quick hello to some of Par's nurses--we didn't see everyone but it was good to see a few. We quickly headed back to the hotel to grab our bags and hit the road. Once again, Par was a perfect angel in the car the entire time--we were so blessed!!!!!! We thank you for all of you prayers for our precious son--he is doing well and we give all the glory to God for all the miracles He has given us.

Much Love,
Liz, Rusty & Par

Back to Gainesville we go...

Bright and early tomorrow morning we are headed to Gainesville for a check-up with Dr. Kays! We are really excited because it could mean discontinuing some of his medicine and possibly his oxygen. But we know that having his oxygen isn't such a big deal, so if we have to keep it for a few more months--we will be okay.







This week has been good. Par has been a very happy little boy--he has gone on many walks this week and really enjoyed all of the fresh air. We played outside a little bit today--Par seemed to enjoy the natural vitamin D. Par has rolled over a few times this week--and I laugh when I tell you that Tiffany (our precious dog) is the one that taught him how. I spent a good amount of time rolling him from his back to his tummy and then letting him try--but he would just stare at me. Tiffany had been watching and ran over to us and started rolling over and over and over. Par was smiling so big--apparently thinking she was funny and then he just rolled over--just like that! Who needs a mom when you have a dog!?!




Please pray for our trip down to Gainesville and for our check-up with Dr. Kays--we continue to be amazed by this precious gift from God.



Much Love,
Liz, Rusty & Par

Par is 3 months old!

I want to thank everyone for your patience in waiting for the next "Par Update"--only about 40 of you emailed me or left a comment asking for me to hurry up and update the blog...believe me, each email and comment made me feel so special--I am humbled by the fact that so many of you love our precious Par (uh...we don't blame you...but we know you have children of your own!) Anyway, sometimes it was difficult not to update--sometimes it was REALLY easy--either way, I'm sort of proud of myself for letting Rusty, Par and me have some good quality time together without worrying about the update.

For our really loyal fans, you probably realized that yesterday was Par's 3 month birthday. We had a great time hanging out watching Par smiling and cooing! He loves to stand up (obviously with assistance) all the time. This week we went on a few walks and some quick errands around town. We've been busy saying prayers for Par's friend Ella who is back in the hospital--please help us pray for a quick discharge.

Although a week has gone by, nothing big has happened--we're just plugging along and that is just how we like it! Tiffany got her teeth cleaned--and pulled through just fine. Thankfully her breath is getting more tolerable each day. As I type this, Par is beside me with his thumb in his mouth--he has been sucking on his hands a lot lately. He's been sleeping great--through the night like a champion! One night this week he had a little meltdown at 4am because of some gas issues--I felt terrible that I couldn't help him. He just cried and cried--pooting pretty steadily in between cries--it was actually pretty comical--but it didn't seem that funny at 4am.

We thank you for your prayers and continued interest in the blog. We praise God for each day with Par and for all that He has taught us by giving us this precious baby.

Much Love,

Liz, Rusty & Par

PS- We took this picture right after his bath--before we put his nasal canulla back on--so don't get excited, he is still on oxygen.

And the weaning begins...

Yes..sadly I am not superwoman and keeping the blog updated daily is becoming more and more difficult with the demands of a 3mos. old baby (well, just about 3 mos.) and trying to get back to a normal life in Birmingham with my precious husband--not to mention the numerous doctors appointments between Par, Tiffany and me. In short, our life has become no different than anyone else! Praise God! The blog has been a great source of therapy for me--especially during the early weeks of Par's life. I can't thank you enough for the support you've shown our family. The power of prayer is a true testament to the faithfulness of our Lord.



I don't know how often I'll update--although I know it will at least be once a week. So, I'll try and wean all of us slowly--and of course, you'll never be deprived of a super cute picture of Par--I'll post those as they come!





This weekend has been quiet--my parents have both been out of town and Rusty worked for part of the weekend giving Par and me a chance to run some errands. He was a perfect little baby in church today--slept most of the time--how great is it that his "morning nap" falls at the same time as church--it just happened--praise the Lord for little gifts! (Now that I've acknowledged it he'll be screaming through the entire service next Sunday I'm sure!) We went on a long walk this afternoon and now Par is asleep--and in about 30 minutes he'll wake up abruptly startled by his own hunger and start screaming for food--thankfully this is easy to remedy.





Much love and peace to everyone!

Love,
Liz, Rusty & Par

Woo Hoo!!!

Par went to the doctor for another vaccine--he did great--cried the necessary amount and then was fine. He didn't even need Tylenol this evening, he has been completely himself! Great news from the doctor--he seemed "pleased" by Par's weight gain. I was relieved because we sort of got off target when I went into the hospital--but for Par to go from just 1 ounce in 11 days to 13 ounces in 16 days--that IS a major improvement! Anyway, I think we will hang onto the scale for another week--mainly because of the switch-a-roo we've pulled on Par with bottle/breast--I just want to
be sure that all is going as it should be.

Par's eating seems fine--I know I sound like a broken record, but he is just a different baby when he is breastfeeding--praise God for this gift! It definitely helps to confirm that it was worth all the pumping--in the NICU and the past week of pump'n'dumpin...I pray--I sincerely pray--that I will not have to pump any more. But of course, I will if something else happens.

It is VERY cold in Birmingham--but somehow, Par has made a few trips outside today without it bothering him--I think he really likes the fresh air, I know I do! Apparently, there is a "winter weather advisory"--not sure what that means--I guess we'll see tomorrow morning!

Par has been very happy today--we told him that his friend Ella was released from the NICU today and is at home. He could hardly contain his excitement and was cooing a bunch this afternoon. He has just now gone to bed--we let him stay up until we had confirmation via Ella's blog. He is now fast asleep in our bed--and now, Rusty and I are enjoying some "down time"--yet, I'm still writing this blog...
We continue to be very thankful for all of the prayers.

Good night,
Liz, Rusty & Par

Another "Great" Day

Par and I had lunch with my mom and my Grandaddy, Par's other great-grandfather--needless to say, it was a "great" lunch! I'm feeling much better--probably will be 100% by the weekend. Par is eating well--we're back breastfeeding--Par is/was a little confused--like, "Make up your mind Mama!"--but he does so much better breastfeeding, he is way more relaxed.

Ella has some really exciting news...check it out...ellawest.com

Thank you for your support. We praise God for each day--and thank him for such great friends and family.

Love,
Liz, Rusty & Par

Our STRONG little boy

Par loves to hold his head up--he has amazing control over it and prefers to be sitting up to "converse" with us. He also is enamored by the television--once he zones in he can't be distracted--not even by his daddy with the camera!



He's been eating a lot today and napping--I am starting to pick up on his own "schedule"--so far it works for me!



Tiffany seems to be acting a little jealous--my mom has noticed how she sits right next to you when you sit on the sofa. She does this anyway, but not with anyone but me or Rusty before--now it is just whoever is holding Par. Tonight she wanted to sit with me but there was no room--she tried anyway. Picture her hopping up on the sofa and then backing up into my lap where Par is already sitting. I was cracking up--she was so frustrated...we've tried to give her some extra lovin' lately--if only it would get a tiny bit warmer and I could take her on some walks with Par!
We thank God for our precious Par and for my continued recovery--I'm feeling even better than I did yesterday--I'm looking forward to feeling 100%.
Love,
Liz, Rusty & Par

Just a regular day.

Nothing exciting happened today--and you can't imagine the relief! Today was our first attempt at a normal day--and Par did great! We were up and rolling mid-morning. Par had his bath and then slept while I washed lots of dirty clothes, sheets & towels. He woke up very hungry and has been eating ever since! The witching hour isn't any better--but it doesn't bother me too much--I like trying to comfort him.
Par was smiling a lot today and kicked it up a notch when his dad came home...but of course, he was a little camera shy tonight--so we have some "serious" pics...





We thank God for your prayers and each day--we praise Him for the miracle of our son. Thank you.

Love,
Liz, Rusty & Par

No....not twins.

I know. I know. The resemblance is uncanny! It is AMAZING how a simple nasal canulla can make two people look so much alike! Actually, the person to the right is Par's great-grandfather, Daddy Joe (my grandfather)--the person to the left is Par. :)

Praise God, my IV has been removed! Rusty administered my final round of antibiotic intravenously this morning and then I went to the doctor around 1pm to have it removed. For the next 6 days, I will be on an antibiotic orally that prevents me from breastfeeding Par--so for now we'll be putting a good dent into our collection in our freezer--and I'll be pumping (a lot). Hopefully the hospital stay and pumping are a penance that can be applied retroactively...not that I have anything in mind.

Par was very excited to wear his outfit that his Aunt Sally gave him for Christmas. He was very warm and cozy in it all day!



Well...for those of you wondering "what else could happen!"--we took Tiffany to the vet today because she had a heck of a case of halitosis! As many know, stinky breath can be a sign of something bad going on--but for Tiffany, she has a mean case of gingivitis. Later in the week she'll have her teeth cleaned, which means she has to be "asleep"--I'm nervous for her, but surely--SURELY--nothing else could possibly happen.



We are looking forward to getting into a routine (again)--or at the least, we are looking forward to clean clothes, fresh sheets and nice showers during reasonable hours--all in our own home.

Thank you for your continued prayers. We thank God for our health and for the great news we're hearing from Ella's camp--looks like she might be headed home this week. Please pray that all will fall into place.

Love,
Liz, Rusty & Par

Par's Baptism

With all the drama going on with me, praise God that we were able to proceed with our plans to baptize Par today. This is most important to us because Fr. Donohoe (our priest and dear friend) was celebrating his last Mass at The Cathedral of St. Paul for a long while. He will be studying in Rome for the next two years--we will miss him very much but plan to visit.
At 10;30AM I was temporarily discharged from St. Vincents Hospital to attend the baptism and due back at 4pm for my next round of antibiotics. At around 1pm we received a call that a home health care person would be able to finish out my antibiotics at home via IV. This is huge--although it is just one more day in the hospital--I am still trying to care for a new baby with special needs and it was just time to go home. Rusty has been the one administering my drugs and so far he has done a great job. It does help that this is all very familiar to us from our long NICU stay--can you believe that NICU stay has already proven to be a great resource for us!?!
Mom threw a gorgeous reception at my parent's house. The food was delicious and the cake was beautiful. Although I was completely exhausted, I so loved being surrounded by family and friends.
Rusty and I look forward to having life back to normal--which involves getting this IV out of my hand--we hope that will be tomorrow. I know I'll have to take it slow--I'm prayerful that the infection is gone. We thank God for our precious baby. We thank Him for the powerful cleansing waters of baptism. Praise to You Lord Jesus Christ!

Love,
Liz, Rusty & Par

Snowy Saturday

Today was Par's first snow...although he wasn't able to make any snow angels outside, he was still my little snow angel! We had a great view of the snow from my hospital room window. Thankfully, Rusty took some pictures at our hour for us to see...and Tiffany told her dad she wanted to wait for Par and me to come home before she played in the snow for the first time--how sweet! So--although we'll be the only people in Birmingham, our family will be praying for a snow later in the week when I finally get home.



We slept okay by ourselved last night--though we really missed Boo. Par slept through the night--I woke up around 5:00 AM in some pain and with a fever. I went ahead and woke Par to change and feed him and then we slept until around 8am when the doctors made their rounds. The doctor on call said that there was good news and bad news.

The bad news is that the doctor feels I'll probably be here through Tuesday. My heart sank--I am going crazy in here!!!! She said that they (the collective pronoun is meant to indicate she and the other doctors consulted) feel that we are SO close to getting this infection beat--my fevers are much lower and with more time between the pain episodes--but the fevers and pain still indicate a problem. Hopefully the tweaking of one of my antibiotics will be the trick.
Please pray that I will be fever free and pain free through tomorrow morning--technically, by 5am I will have gone 24hours without fever and could possibly be discharged. But--Above all, I want God's timing--my vocation is motherhood and being a wife to Rusty--unless I get well, I can't continue with these gifts from God.
The good news is that no matter what the decision is on discharging me tomorrow, I will get a "pass" to go to Par's baptism at 11am. It happens to fall between my schedule of antibiotics and so they will just unhook me from the IV (leave the IV in though) and let me out for mass and the luncheon. Praise God for this gift. I plan on starting a trend of hospital tape and IV's with needle marks and bruises--so tomorrow will be a great day to debut it!



Par is still the favorite baby in the unit. All the other babies are newborns and not much fun--so nurses are so surprised when they come in and see an alert baby with lots of smiles! Plus, this has been a great way to spread the word about Dr. Kays and Shands--everyone is so interested in his journey and this boy is not afraid to show his tummy scar--not to mention his tummy trick. One thing we've discussed with Ella's parents is the need to educate the medical communtity on the capabilities in medicine with saving CDH babies--hopefully, Dr. Kays will be able to point us in the right direction. But it was definitely reassuring to hear just how interested and "hungry" the nurses hear are to learn about Par's amazing journey and this famous "Dr. Kays"! Par is still eating well and still trying to nurse on everyone which is reassuring to me.
Now for the even better news--Sal is coming to spend the night with us tonight! Yep, Par's aunt/godmother is driving in from Furman as I write this for a slumber party and the baptism. I was worried Sally might not make it for the snow and ice--but as Sal texted, "neither snow, nor rain, nor sleet can keep me from getting to you" Welcome Home Sal!!!!!

I thank you for all the thoughtful phone calls, emails, notes--your prayers and support mean so much to me. I ask that you will continue to pray for Par as he is still "enjoying" his nasal canullas for his oxygen and for Par's friend Ella who is making HUGE progress. May God bless you.

Love,
Liz, Rusty & Par

Don't take their place!!!!

For every mother and father out there--there have probably been many times when you've seen your child struggle or in pain and you responded to this struggle/pain by saying, "Oh, if I could take your place, I would"
Well I am here to tell you--those are stupid words. Children are much better at handling the pain and will soon forget the trauma than adults--from now on I'll just say "I would take the pain away if I could."
You see, I discovered today that I am just a big wimp. I have long prided myself on a "high tolerance for pain" yet today I found myself wincing at the alcohol wipe and immaturely not inviting the nurses into the room when they knock. Today has been rough--I was all excited to find out that plans were in process for me to be discharged tomorrow and then things started to unravel (uh...remind you of anything? NICU2?) Anyway, I started to run a fever and then my kidney started hurting a lot--to the point where I needed a pain killer. On top of that, my vein blew and so I lost my IV--I thought they might finish my antibiotic orally but that was a no go. So--count them--one, two, three, four, five nurses attempted to place the IV--yes, that gigantic needle was stuck into me 5 times unsuccessfully. Not to mention the number people who came and checked to see if they saw a vein and left without a stick. Finally, the nurse who had first put the IV in on Tuesday showed up and saved the day--but I do look like a drug addict with all the needle marks.
So, I don't know when I am going home. I can't control my fever--and in the long run, I need to get better or I could end up with kidney damage. As I may have mentioned before, my hurry is Par's baptism on Sunday.







Par enjoyed himself today--my nurse just loved him and was very attentive to both of our needs. He was all smiles this morning--and of course when his dad showed up (he always smiles for Rusty). He was so good when I went through a bad spell of pain/fever this afternoon--but was very intent on letting us know when he was hungry--and in turn, very good at eating it. Go Par! We haven't weighed him since Tuesday so I am anxious to weigh him when we get home.
Par and I are spending tonight alone--because of the pending snow storm, I didn't want my mom stuck here at the hospital and Rusty needed to be at home with Tiffany. Par and I are all snuggled up in the bed waiting on the snow--we are quite the pair--IV drips and oxygen--both of us tethered to these machines--thank goodness Par isn't a toddler or we would be way tangled up. I feel alright--the nurse just brought in a hot pack for my kidney to go to sleep with--please pray that my kidney will be healed and the fever gone and that we will be able to leave tomorrow, even if it is snowing. Praise God for all the blessings he has given us.
Hopefully we'll have snow pictures tomorrow.
Love,
Liz, Rusty & Par

Who needs Grey's Anatomy?

Yep, who needs Grey's Anatomy when they spend most of their times hanging out in hospitals! Wow...am I sick of the beeps, the smells, the lights that are on 24 hours a day--for some reason this didn't bother me so much in Gainesville--but today it is starting to get to me.

My ultrasound of my kidney was fine--nothing abnormal--so we are still just dealing with a severe kidney infection. I didn't mention in the other posts--but apparently kidney infections are known to have up and down fevers while being treated. So--that is what I have been experiencing--thankfully this is the first day my fever hasn't been up to 105--my high today was 103ish--but that was around 9-10am--it has been around 100 most of the day and right now I am fever free. But Dr. Christine said she wouldn't be surprised if it spiked again during the night. Hopefully it won't!



Par is doing well...he is missing his mama/Par time. But he is enjoying his Boo being here to comfort him. My room is very happy right now--I have beautiful sunflowers from the Feagins, the Petreys brought me some tulips, Tina & Josh (Ella's parents) sent some roses and my grandparents (Mama Carol & Daddy Joe) sent some very sweet balloons! And I thought I missed out on delivering at St. Vincents! Julie was suggesting we put a blue bow on the door and just play it up like I've just delivered! (For those of you confused, I am in the postpartum part of labor & delivery so I can keep Par with me without fear of him catching anything from a sick person). Well, all I can say is that the generosity we've received with Par and now with me is only encouraging me to find more drama in our life--I'm not sure how we'll get along without all the attention! Obviously I am kidding, we are very anxious to get back to "normal" life--we praise God for the wisdom of Dr. Christine in putting me in the hospital without hesitation--(105 can cause seizures) and we are thankful that it is only a kidney infection and that it is treatable.



God is good. We praise Him for all the good He gives us in our lives--these wonderful nurses, our friends and family, Ella's recovery, Par's breastfeeding,--how great is it that this list could go on and on!?!

Thank you for your prayers. Thank you for your concern for our family.
Let is snow, let it snow, let it snow!!!!
Love,
Liz, Rusty & Par

PS--If anyone has any good ideas for an illness for Rusty--let us know, we don't want him to miss out on good hospital time!

Not so fast...

I want to first put your minds at ease about Par. I know a lot of you are probably freaking out that my baby is with me when I am so sick--but his pediatrician made a "house call" (his practice is in a different wing of the hospital) and gave Par a head to toe assessment and said he is fine. He is also aware of the situation with me and told me I can call him at any time to check on Par.



As of this afternoon, we finally have an official diagnosis of kidney infection. Dr. Christine is still growing the culture to figure out how we can attack it better with antibiotics (right now we are using a broad spectrum of antibiotics). Unfortunately, it looks like I'll be here through the weekend...but Par is being a great sport and enjoying the extra attention from the nurses. I had an ultrasound of my kidneys this morning, we hope to hear back this afternoon if there is anything to speak of...but I'm hopeful that we're just dealing with a plain infection. I'll update later when we know more.



Par says hello and "thank you" for the prayers for his mama!
Love,
Liz, Rusty & Par

We missed hospital living...

Well...I guess we just missed the hospital.

I was admitted to the hospital today for a kidney infection. I am typing this with Par sleeping right next to me. My doctor was nice enough to get us a room on the postpartum floor of labor and delivery so Par could stay with me.



Last Thursday my lower back started hurting and I called the doctor and the nurse said it sounded like a urinary tract infection and to just up my fluids and drink cranberry juice. She also said I could take Motrin for the pain. So that is what I had been doing, but the pain was getting worse. This morning I woke up with a fever of 100. By lunch time it was 103--then 104. I called the doctor and they said to come in to be checked out. Basically they said that it was past the point of treating with a shot and that I would need to be hospitalized for a few days to take care of the infection. By the time I was admitted, my fever was 105.4 and they put ice packs on me to bring the fever down. It is finally down to 98.5 and I am finally feeling like myself again.



On a happy note, Par weighed in at 8 pounds .1 ounces today. The doctor was satisfied with me giving him the weight over the phone so I didn't need to take Par in to be weighed--he said to just keep doing what I'm doing because it is working. Unfortunately, I can't breastfeed him right now because of all the antibiotics--but probably by the weekend.



Par has been a REALLY good little boy today--especially with everything going on. He just goes with the flow--we are so blessed to have such an easy going baby.



So, for the next few days I'll be here at St. Vincent's Hospital just hanging out with Par. My mom is spending the night with me and helping with Par--earlier today I couldn't even pick him up because I was afraid I would drop him because I was dizzy and shaky--but now I feel 100 times better--so hopefully mom won't feel obligated to hang out in a hospital all day.

I ask that you will pray for healing of my kidney infection and a quick recovery so we can go home soon. We continue to pray for Ella and of course, for our little boy Par.

Love,
Liz, Rusty & Par